When the Medication Stops Working

Being diagnosed with MS comes with enough baggage all on its own. But going through two years of a specific form of therapy and hearing the news that the medication hasn’t actually been working? Now that’s its own animal.
 

Hearing the phrase “we need to switch your medication, you’ve developed new lesions” is never something someone with MS wants to hear. After going through the turmoil of the diagnosis, finishing my bachelor’s degree without my dominant hand, and finally getting back on my feet (literally), the last thing I wanted to hear was that I was still developing lesions.
 
I was on Copaxone injections three times a week for about two years until I got my negative MRI results. I felt 100% better, just a little shaky. No more flare ups, no more problems… right? Wrong. My MRI showed many new lesions developing in my brain, proving that the medication’s magic had run its course.
 
My mind was buzzing with 1,000 thoughts!
 
Why me? Why can’t I just be normal? Is anything ever going to work?
 
Why even bother?
 
This only lasted for about two days until I finally realized that it didn’t matter. My life is going to be what I make it, and there is nothing else I can do about my condition than embrace it and try to live the healthiest lifestyle I can. I accepted the results, and I moved forward.
 
Today, I am on Tecfidera and am coming up on a year of this medication this August. I have an MRI scheduled this month, so I won’t even know if I’m going to be faced with the same issue as last time (and this medication came with a lot more side effects!). All I can do is stand my ground, listen to my results and do everything in my power to help myself get through it.
 
All I can say is this:
To anyone who is discouraged. To anyone who is on the verge of giving up. To anyone who feels like they have no one to turn to… just keep going. One of my favorite phrases is “this too shall pass.” Things are hard and they always will be, but if you can wake up every morning with a smile on your face, then you are winning. Your medication stopped working—it’s tough, but are you going to stop? You need to use a cane this week, while the week before you were running half marathons. But you are still strong. Just remember that you are strong every single day of your life that you choose to get out of bed.

I don’t know what my MRI will show this July. Does it worry me? Sure. But despite everything, I am unstoppable. And so are you. 
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Catherine

Catherine Weston

Catherine is a professional in the medical marketing industry from Long Island, NY. She aspires to show the world that MS doesn't hold her back. She was diagnosed in 2014 and has been striving to help others overcome their fears and limitations since (she also loves sheep!).

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    19 Comments

  • Gerri Ballas   Jul 14, 2017 12:50 PM
    Wonderful attitude. Positivity & perseverance is the answer for most of us. I was diagnosed at 40 but may have had long before that. I am now 75 and going strong. I take Aubagio, an oral med, that seems to be working very well. I also believe in the power of prayer and gratitude to God for giving me the right doctor, the right meds and the emotional support from family and friends. God bless you.
  • SmartyPants   Jul 15, 2017 12:05 AM
    Catherine, what words of encouragement, you give so many hope, I thank you for that. I have Progressive MS and haven't had any additional issues for ten years, my right leg is half paralysed and i use a leg brace and walker or wheelchair. I do lots of exercise, bike riding twice a day 8 miles in my living room, and swim twice a week doing laps for an hour. I swear that exercise helps me not to progress. I haven't had an MSI in over ten years and won't get one unless I feel I need to. Keep up your hopes and know that every person with MS is their own story. Your story touched my heart and gives hope to so many more.
  • Marcos Magalhaes   Jul 17, 2017 4:10 PM
    Amazing the declaration above!!!!
    I'm brazilian, 65 years old and I' ve MS since 2009! First I used betainterferon for 4 years and at finnaly the medication was not working good. I had many "surtos" and they left serious injury; now I'm using fingolimode for 3 years ago....My right leg doesn't have a good function and the last 2 years it's going to be more bad! I don't care what's is going on... what I know is: let it be!!!!
    If I wake up in the morning and get to move alone... everything is gonna be OK!!!!
    I'm doing Pilates 2 times a week and hidroterapy every day in a hot swimming pool....
    Sorry my bad english!
    Marcos
  • Kathy   Jul 17, 2017 5:56 PM
    I just found out today that my meds are no longer working. I was feeling very discouraged because it had been several years since I have had active lesions your article was very timely. Thank you.
  • clralbin38  Jul 17, 2017 9:33 PM
    I am in a similar situation: Diagnosed in '15, have been on Copaxone ever since.

    New lesions. Copaxone has never worked and it seems like such a waste. It is discouraging.

    I am being switched to Tecfidera also. I hope this one does the trick and I can have less flair-ups.

    Good luck!
    Cathy
  • Susan Kramss   Jul 17, 2017 9:48 PM
    Thanks Catherine for sharing. When I was first diagnosed 15 years ago, they put me on Copaxon. Three years later, after an allergic reaction to it, a different doctor told me I showed no signs of MS and had possibly been misdiagnosed. My relief was short lived when cognitive issues began worsening a couple of years later and new lesions were found. I wasn't treated as there were not many other good choices at the time. Two attacks later, we moved to California and I was placed on Tysabri - the gold standard. I have to admit I had a good run for almost four years. But then, the symptoms began taking a downward turn. The drug had stopped working. I developed IRIS, a rebound attack much worse than anything I had dealt with. Having moved back to Massachusetts, I turned to the UMASS MS clinic for help. On Monday I begin Lemtrada, an aggressive treatment. Sort of a last ditch effort. Between shutting down your immune system, so your body can rebuild it from scratch and all the nasty side effects and warnings, it does offer hope of stopping MS in its track and even alleviating the damage already done. I have high hopes, but have to admit I fear hearing those words again - the drug isn't working. Wish me luck.
  • Shivani   Jul 18, 2017 7:17 AM
    Catherine, thank you for the encouragement. Even I have gone through the same situation, even worse, I was on Avonex injections once in a week fro 2 years and 1 fine day after reviewing my MRI reports my Doctor said that we have to switch to Tecfedera because I had developed many new lesions, despite of having any kind of problem my medications were changed. After 1 year of taking Tecfidera I was struck by a mild PARATHESIA attack in my arms and fund a bright white and a big lesion in MRI reports. However, my doctor has not yet changed my medication. My next MRI is due in few months, and I am not sure what he will suggest if I continue to develop new lesions.
    But, as you too wrote "this too shall pass." I believe it will and some day we will find some cure to this and will be able to live our lives without any worries of using a can or something or may be some other kind of need for supports be.

    "I know god won't give me anything i can't handle, i just wish he didn't trust me so much."
  • Michelle   Jul 18, 2017 8:14 PM
    I have been on tecfidera for 3 years. I have no new lesions and have actually shrank a few. Keep moving forward you can do it.
  • Julie Newport   Jul 18, 2017 10:12 PM
    My neuro told me last week that I have at least 20 new lesions on my brain. I have been "promoted" to Progressive/Remitting. He thinks I will be a good candidate for Orevus, the new med for progressive MS. It's a bit disconcerting to be told you are progressive but it's also good to be told at a time when there has finally been a drug for it. In the process of being approved thru my insurance and all. Wish me luck!
  • Laura   Jul 20, 2017 4:13 PM
    I was diagnosed in 2014 also, I am going on medication number 4 next month, it is so frustrating dealing with side effects only to find the medication isn't helping. But like you said you just got to keep going.
  • Karen Caitilin   Jul 20, 2017 9:04 PM
    Please can someone contact and give me emotional support.
    I have MS and feel all alone. I feel like everyone has deserted me.
    Thank you,
    Karen
  • Sara-L  Jul 22, 2017 4:18 PM
    I can surely understand what you are going through. A few years ago I was switched to Tysabri from Corazon and was told that Tysabri was a new medication that was giving promising results. After being on the medication 3 years I went from using a walker to becoming completely bedridden , not only that but come to find out that I had become JVC positive. So yes I totally understand you, and that is why now I am no longer on any Ms medication.
  • B Campbell   Jul 25, 2017 10:17 AM
    Same here, been on Copaxone since my diagnosis in August 2015. My neurologist wants to switch me to Tecfidera as well. You mentioned that there are more side effects; could you say more about what the side effects are?

    Thank you for sharing!
  • Aliyya Jones   Jul 25, 2017 11:35 AM
    I'm going through the same thing right now! My medicine ( Tysabri) is no longer effective due to my positive testing of JCV virus. I'm at my end as the new medicine that just came out (ocrevus) has to many side effects for me and I choose not to use it. I'm considering Tecfidera maybe this will help me...I hope so...thank you for the encouragement I really need this at this time!
  • Erick   Jul 25, 2017 10:23 PM
    My initial 'onset' was 12 years ago with a definitive RRMS diagnosis 7 years ago. My first DMT was Copaxone for 2 years followed by Tecfidera for 1.5 years, the former seemed modestly effective, while the latter was wholly-ineffective. I am currently receiving semiannual Rituximab infusions. My point...I certainly agree, that is, a positive attitude is wholly-warranted given the unknown nature of MS. Existing treatments/DMTs are considered effective 12% to 86% of the time as are generally based solely on one measure, e.g., MRI, etc. The simple fact is, the multi-factoral and multi-faceted nature of any auto-immune disease, and particularly MS, means that the practice of one drug and one measure used as a linear 'one step at a time' protocol must continually be re-evaluated by both the physician and patient. Always ask questions, stay informed, and yes...be hopeful!!! I am...
  • Angel   Jul 28, 2017 1:39 PM
    Hi, i just want to say thank you for ur words of inspration, i too auffer from MS. What keeps me going is i tell myself 'i am a rock and nothing can move me'.plus the support of family helps alot. So stay strong and carry on.
  • crweston94  Aug 2, 2017 3:12 PM
    If I could reply to all of you individually, I would! I am so grateful to have the opportunity to share my personal experiences with all of you and to give my readers hope for the future. Just because we suffer from MS does not mean we are doomed - I see it as an opportunity. I see it as a chance to show the world that MS doesn't define me, just the way it doesn't define any of you. Thank you from the bottom of my heart for reading, it's been a pleasure.
  • Shannon Ayotte   Aug 10, 2017 9:45 AM
    How can i help. Encouraging words are not enough . whats being done to cure this disease? and again what can i do to help
  • Garrett   Sep 13, 2017 9:49 AM
    I love how your article inspires people to go on living despite of everything. I have suffered a series of sever anxiety attacks and my doctor told me the exact same thing you have wrote here. Then I learned how to be more mindful, more at peace and forgiving with myself, and not get too much stressed out. I got into sports and turn into a vegan. Even with protein shakes, I turn into plant based protein powder (good thing I found this https://lyfefuel.com/products/daily-essentials-shake-chocolate). It changed the way I see life and how I think. I live happy with my 2 kids and my loving wife.